Finished Ten Days IV Steroids, Intense PT...

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Finished Ten Days IV Steroids, Intense PT...

Postby marcstck » Thu Jun 01, 2006 8:54 am

Well, I'm back from my two week hospital adventure, which included ten days of Solumedrol and five days of physical and occupational therapy. I started off in a local hospital, where they started the IV, and then transfered to the Helen Hayes Rehab Hospital in Rockland County, New York.

The effect has been remarkable. I was quite skeptical that the steroids would have much effect, as their reputation with PPMS is poor, but my improvement has been pretty dramatic. Pre-Steroids, I could barely move my right arm and leg. Now, both movement and strength have returned, to levels I haven't seen in at least a year. This is after three years of steady progression. I only hope I can hold onto my gains after the steroids wear off. I'm hopeful that the fact that I was able to regain ability indicates that my nerves still have some life in them, and have not suffered irreversible axonal death.

As for getting through the ten days of SM, it wasn't as bad as I anticipated. I felt very speedy, and am still having trouble sleeping, and have gained a bit of weight. But it wasn't the excruciating, emotional experience I was dreading. I'm now on the first week of a four week Prednisone taper, which also hasn't been as bad as expected.

Next step, according to doc, is to get through the thirty day taper, and then start on a drug to halt progression, either Cytoxan, Rituxan, or Daclamizab. I'm anxious to get started on this, as I want to hold onto the gains I've made.

The PT and OT were helpful, but 99% of the gains I attribute to the IVSM. I'll continue doing some outpatient PT, just to keep my muscles toned, but I don't think it would be much help without the boost provided by the steroids...

Keep fighting the fight, folks...
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Postby Arron » Thu Jun 01, 2006 9:17 am

Hi there-- so great to hear you're doing better! Steroids are often a deal with the devil, with speedy improvement traded off for heavy side effects, and I'm definitely glad to hear the latter wasn't as bad for you as expected.

I presume you meant "Daclizumab," which along with Rituxan, is in trials... please let us know what you learn about these therapies as you make your decision
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby bromley » Thu Jun 01, 2006 9:46 am

marcstck

Good to hear that you have seen benefit from steroids for PPMS. As you know Rituxan is in Phase III trials for PPMS. I'm not sure if a Phase II trial took place, but it must show some promise.

Best of luck which ever treatment you get. Let us know how you get on.

Ian
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